For a top room at the medical bit of a university, it (kinda) echoed a cafe. There was coffee, cake, refreshments, and the table cloths took the edge off the academic air. But it was the buzz of activity and chatter that redefined the space.

This was the first experimental pop-up research cafe, where members of the public would chat to health researchers to share info and insight into the real-life impact of research. And there is an aim to drive these events into communities. This was all about connecting, sharing and feedback – it was very much a learning exercise.

“This is hopefully the first of many,” said Tanya, who supports members of the public to get involved in shaping research. It’s her job to help members of the public get involved in health research.

Learning from each other

“We are bringing researchers into the room with members of the public to get them talking more and learn from each other.”

It’s mutually beneficial. The researchers hear from the community and find out what research actually needs to be done. And the members of the public learn about what happens in research, and maybe feel the benefit for themselves or their community.

Starting conversation

“It’s about starting those conversations, and hopefully that will lead to other opportunities,” said Tanya. “Somebody here might say, ‘I’ve really enjoyed today, come down into my community, bring that research with you’.”

What they were aiming for was “very informal, very chatty, open conversations… and let’s see where that leads.”

Killer fungus

Ange Brennan is the Public Engagement Manager for the MRC Centre for Medical mycology. “I work with nearly 120 medical mycologists. We deal with killer fungus,” she said. That’s not the kind of little fungus that grows in the forest, but the stuff that’s all around us and can actually get into our bodies and cause us a lot of harm.

“You and I will be breathing in fungal spores as we stand here,” she said. That was no reassurance at all. “If we are healthy and we look after ourselves, it’s not a problem. But as soon as our immune system is compromised and we’re breathing in these fungal spores, it can get into our bodies and make us incredibly poorly.” With the world becoming warmer and wetter, we’re staring down the barrel of a fungal gun. “And fungal infections are not as well researched as things like bacterial and viral infections.”

Informed approaches

For Ange, the first role of these cafes and of community involvement is getting the word out. The second is hearing from people. That feedback has already informed some of their approaches and they are looking for more.

“People don’t realize that fungal infections kill over 2.5 million people every year, and that number is increasing. So we should be worried about it, and we should be scared by it as well,” said Ange. The researchers were already working with people and their table was covered with the colourful community-created artwork from textile students at Exeter College, made to explain these fungal killers.

That connection is a refreshing change from the computers and lab work the researchers are usually involved with.

Georgina Marks works for Action for Children, and is also doing an NIHR Funded Free Doctoral Local Authority Fellowship around community champions and mobilising knowledge about the first 1001 days of a baby’s life. Her aim is to get evidence-based information out to parents. She explained the attraction of the pop-up research cafe.

Friendly, informal, relaxed

“It’s that opportunity to come in and meet with some of the researchers here, but I’ve also got some of the community members coming along and it’s about bringing those worlds together. It’s a really nice, friendly, informal, relaxed atmosphere.”

Paul, a member of the community, said: “I’ve just gone around the tables talking to different kinds of researchers and found it very interesting. And I’ve taken a lot in, I met some different people, and I’m learning new things that I didn’t know about. I would definitely recommend it.”

Kate is a researcher at the University of Exeter, whose job is to involve people in research – it’s called patient and public involvement.

Direct experience

“Patient and public involvement is a way of researchers partnering with people who have direct experience of the thing they’re researching,” she explained.

She’s keen to explore negative experiences of those relationships.

“Because they’re not often discussed,” she said. “But if we unpack them and look at them in detail, then we might be able to avoid them in the future.”

She’d already got plenty of valuable feedback, and there was a load of mixed views about how to collect the data.

Valuable feedback

“Some people want to be in groups to discuss issues, because they feel that that would be a safer way of doing it. Other people feel the opposite. They want to do it through an anonymous survey, where they can say whatever they want and no one’s there to hear it. But some people think surveys are really bad, because someone will relive their negative experience and then just be left alone with it.”

Ralph was there as a poverty related mentor. “I’ve had some great conversations,” he said. “There’s a discussion about the academic world and community world, and how well do they interact. Today seems like a good blend of both, with very down to earth people from the academic world.”

‘Off the beaten track’

The project he’s involved with aimed to go deeper into the community and find people to relate to that are ‘off the beaten track’.

“If researchers go into communities and community centres, they’re more likely to meet people that haven’t already been on a number of research projects,” he said.

One question Ralph had was whether people get fed back about the research process, and their value in it.

“In our projects, they’re brilliant,” he said. “We’ve been embedded in the projects – the senior academics, the researchers, the community organisers have a regular check in. It’s voluntary for everyone, and it’s about being involved, rather than a hit, a take, and then people being left on their own again.”

“Amazingly helpful”

Jenny and Lorraine from a community centre in Paignton said: “We’re here looking at research and how it would work in our community centre.” They had already signed up to find out more about the blood pressure project from GP Brian Fisher, who we spoke to next.

Brian Fisher, a GP, is working on a blood pressure project with Evergreen Life. He was hoping to get members of the community to become blood pressure researchers with the project. “It’s been amazingly helpful,” he said. “I was expecting nobody would be interested and nobody would sign up to be a researcher, but the opposite has happened. I have a load of possible researchers, which is wonderful. It was a step into the unknown. But even in the process of talking to people, it’s made them more aware of some of the issues that you’re trying to raise.”

A good difference

Shahla came from Plymouth. “I spoke with all the groups on all the tables,” she says. “It’s been really good for the first time. I think in the future, it could be even better,” she enthuses. “It’s very interesting that now researchers want people to join to their research because they wanted to make a difference… a good difference.”